Palliative care for people with dementia living at home: a systematic review of interventions

Background: The European Association for Palliative Care White Paper defined optimal palliative care in dementia based on evidence and expert consensus. Yet, we know little on how to achieve this for people with dementia living and dying at home. Aims: To examine evidence on home palliative care interventions in dementia, in terms of their effectiveness on end-of-life care outcomes, factors influencing implementation, the extent to which they address the European Association for Palliative Care palliative care domains and evidence gaps. Design: A systematic review of home palliative care interventions in dementia. Data sources: The review adhered to the PRISMA guidelines and the protocol was registered with PROSPERO (CRD42018093607). We searched four electronic databases up to April 2018 (PubMed, Scopus, Cochrane library and CINAHL) and conducted lateral searches. Results: We retrieved eight relevant studies, none of which was of high quality. The evidence, albeit of generally weak quality, showed the potential benefits of the interventions in improving end-of-life care outcomes, for example, behavioural disturbances. The interventions most commonly focused on optimal symptom management, continuity of care and psychosocial support. Other European Association for Palliative Care domains identified as important in palliative care for people with dementia, for example, prognostication of dying or avoidance of burdensome interventions were under-reported. No direct evidence on facilitators and barriers to implementation was found. Conclusions: The review highlights the paucity of high-quality dementia-specific research in this area and recommends key areas for future work, for example, the need for process evaluation to identify facilitators and barriers to implementing interventions.Peer reviewedFinal Published versio

Involvement of palliative care services strongly predicts place of death in Belgium

Introduction: Place of death is considered a quality indicator of end-of-life care and enabling people to die were they choose is an important aspiration of palliative care. This study aims to examine the association between involvement of palliative care services and place of death. Methods: Data about patient characteristics, use of general health care, and involvement of palliative care services in nonsudden or expected deaths in all health care settings in 2005-2006 (N = 1690) were collected by a surveillance network of general practitioners (GPs) in Belgium. Bivariate and multivariate associations between involvement of palliative care services and dying at home, in hospital, in a care home, or in a palliative care unit were examined using chi(2) tests and Wald tests. Results: Palliative care services were involved in 21.8% of deaths of those living at home, in 29.1% of those living in care homes, and in 12.4% of deaths in hospital. People were more likely to die in their usual residence rather than in hospital if multidisciplinary palliative home care teams (odds ratio [OR]: 8.4, confidence interval [CI]: 4.7-15.1) or the palliative care reference persons of their care home (OR: 9.4, CI: 3.3-26.7) were involved. Involvement of multidisciplinary palliative support teams in hospitals was associated with lower chances of dying at home (OR: 0.3, CI: 0.1-0.9). High involvement of GPs was not directly associated with out-of-hospital death. Discussion: Involving multidisciplinary palliative home care teams and palliative care reference persons in care homes could support people in dying out-of-hospital. Health care policy-makers should consider strategies to improve involvement of palliative care services in all health care settings

Self-reported needs and experiences of people with dementia living in nursing homes : a scoping review

Objectives: With rates of dementia continuing to rise, the impetus on improving care for people with dementia is growing. Unmet needs of people with dementia living in nursing homes have been linked with worsening neuropsychiatric symptoms, higher levels of depression, and reduced quality of life. Furthermore, proxy accounts exploring the needs of people with dementia have frequently been shown to be unreliable. Therefore, this literature review aims to explore the self-reported needs and experiences of people with dementia in nursing homes. Method: A scoping review of the literature was carried out using the databases PubMed and PsycINFO to search for relevant articles according to PRISMA guidelines. Search terms were designed to include both quantitative and qualitative study designs. Thematic synthesis was used to categorise findings into themes related to self-reported needs and experiences. Results: A total of 41 articles met the eligibility criteria. An analysis of study characteristics revealed more than half of studies used a qualitative design. Thematic synthesis resulted in eight themes: activities, maintaining previous roles, reminiscence, freedom and choice, appropriate environment, meaningful relationships, support with grief and loss, end-of-life care. Conclusion: Whilst the voice of people with dementia has previously been neglected in research, this review has shown that people with dementia in nursing homes are able to describe their experiences and communicate their needs. The findings in this review have provided a contribution towards guiding evidence-based practice that is tailored to the needs of nursing home residents with dementia

Higher prevalence of dementia but no change in total comfort while dying among nursing home residents with dementia between 2010 and 2015 : results from two retrospective epidemiological studies

Important policy developments in dementia and palliative care in nursing homes between 2010 and 2015 in Flanders, Belgium might have influenced which people die in nursing homes and how they die. We aimed to examine differences between 2010 and 2015 in the prevalence and characteristics of residents with dementia in nursing homes in Flanders, and their palliative care service use and comfort in the last week of life. We used two retrospective epidemiological studies, including 198 residents in 2010 and 183 in 2015, who died with dementia in representative samples of nursing homes in Flanders. We found a 15%-point increase in dementia prevalence (p-value < 0.01), with a total of 11%-point decrease in severe to very severe cognitive impairment (p = 0.04). Controlling for residents' characteristics, in the last week of life, there was an increase in the use of pain assessment (+20%-point; p < 0.03) but no change in total comfort. The higher prevalence of dementia in nursing homes with no change in residents' total comfort while dying emphasizes an urgent need to better support nursing homes in improving their capacities to provide timely and high-quality palliative care services to more residents dying with dementia

Research, recruitment and observational data collection in care homes : lessons from the PACE study

Objective: Care homes are a common place of death for older adults, especially those with complex health needs or dementia. Representative, internationally comparable data on care home facilities and their residents is needed to monitor health and wellbeing in this population. Identification and collection of data from care homes can be challenging and often underreported. This paper draws on the experiences of the PACE study, a cross sectional mortality follow back study conducted in six European countries. Results: Multiple challenges were encountered in creating a sampling framework and contacting, recruiting and retaining care homes in the PACE study. Recruiting a randomly identified, representative cohort from a stratified sampling framework was problematic, as was engaging with care homes to ensure high response rates. Variation in the funding of care homes across the six countries involved in the study may explain the additional challenges encountered in England. Awareness of the challenges encountered in England in implementing an international study in care homes can inform the design and implementation of future studies within care homes. Further discussion is needed to determine the barriers and facilitators to conducting research in care homes, and how this is shaped by the focus of the study

Timely short-term specialised palliative care service intervention for frail older people and their family carers in primary care : study protocol for a pilot randomised controlled trial

Introduction There is limited evidence regarding the effectiveness of timely integration of short-term specialised palliative care services for older people in primary care. Using a Theory of Change approach, we developed such an intervention, the Frailty+ intervention. We present the protocol of a pilot randomised controlled trial (RCT) with a process evaluation that aims to assess the feasibility and preliminary effectiveness of the Frailty+ intervention. Methods and analysis We will conduct a pilot RCT in Flanders, Belgium. Frail older people who are discharged to home from hospital will be identified and recruited. Seventy-six will be randomly assigned either to the control group (standard care) or the intervention group (Frailty+ intervention alongside standard care). Data will be collected from patients and family carers. At the core of the Frailty+ intervention is the provision of timely short-term specialised palliative care facilitated by a nurse from the specialised palliative home care service over a period of 8 weeks. We will assess feasibility in terms of recruitment, randomisation, acceptability of the intervention, retention in the programme and data completion. The primary outcome for assessing preliminary effectiveness is a mean score across five key symptoms that are amenable to change (ie, breathlessness, pain, anxiety, constipation, fatigue), measured at baseline and 8 weeks post-baseline. The process evaluation will be conducted in the intervention group only, with measurements at 8-11 weeks post-baseline to evaluate implementation, mechanisms of change and contextual factors. Ethics and dissemination The study has been approved by the ethics committee of University Hospital Ghent. Results will be used to inform the design of a full-scale RCT and will be published in a peer-reviewed, open access journal

Is individual educational level related to end-of-life care use? : results from a nationwide retrospective cohort study in Belgium

Background: Educational level has repeatedly been identified as an important determinant of access to health care, but little is known about its influence on end-of-life care use. Objectives: To examine the relationship between individual educational attainment and end-of-life care use and to assess the importance of individual educational attainment in explaining differential end-of-life care use. Research Design: A retrospective cohort study via a nationwide sentinel network of general practitioners (GPs; SENTI-MELC Study) provided data on end-of-life care utilization. Multilevel analysis was used to model the association between educational level and health care use, adjusting for individual and contextual confounders based upon Andersen's behavioral model of health services use. Subjects: A Belgian nationwide representative sample of people who died not suddenly in 2005-2007. Results: In comparison to their less educated counterparts, higher educated people equally often had a palliative treatment goal but more often used multidisciplinary palliative care services (odds ratios [OR] for lower secondary education 1.28 [1.04-1.59] and for higher [secondary] education: 1.31 [1.02-1.68]), moved between care settings more frequently (OR: 1.68 [1.13-2.48] for lower secondary education and 1.51 [0.93-2.48] for higher [secondary] education) and had more contacts with the GP in the final 3 months of life. Conclusions: Less well-educated people appear to be disadvantaged in terms of access to specialist palliative care services, and GP contacts at the end of life, suggesting a need for empowerment of less well-educated terminally ill people regarding specialist palliative and general end-of-life care use

Implementing advance care planning in routine nursing home care : the development of the theory-based ACP+ program

Background While various initiatives have been taken to improve advance care planning in nursing homes, it is difficult to find enough details about interventions to allow comparison, replication and translation into practice. Objectives We report on the development and description of the ACP+ program, a multi-component theory-based program that aims to implement advance care planning into routine nursing home care. We aimed to 1) specify how intervention components can be delivered; 2) evaluate the feasibility and acceptability of the program; 3) describe the final program in a standardized manner. Design To develop and model the intervention, we applied multiple study methods including a literature review, expert discussions and individual and group interviews with nursing home staff and management. We recruited participants through convenience sampling. Setting and participants Management and staff (n = 17) from five nursing homes in Flanders (Belgium), a multidisciplinary expert group and a palliative care nurse-trainer. Methods The work was carried out by means of 1) operationalization of key intervention components identified as part of a previously developed theory on how advance care planning is expected to lead to its desired outcomes in nursing homes into specific activities and materials, through expert discussions and review of existing advance care planning programs; 2) evaluation of feasibility and acceptability of the program through interviews with nursing home management and staff and expert revisions; and 3) standardized description of the final program according to the TIDieR checklist. During step 2, we used thematic analysis. Results The original program with nine key components was expanded to include ten intervention components, 22 activities and 17 materials to support delivery into routine nursing home care. The final ACP+ program includes ongoing training and coaching, management engagement, different roles and responsibilities in organizing advance care planning, conversations, documentation and information transfer, integration of advance care planning into multidisciplinary meetings, auditing, and tailoring to the specific setting. These components are to be implemented stepwise throughout an intervention period. The program involves the entire nursing home workforce. The support of an external trainer decreases as nursing home staff become more autonomous in organizing advance care planning. Conclusions The multicomponent ACP+ program involves residents, family, and the different groups of people working in the nursing home. It is deemed feasible and acceptable by nursing home staff and management. The findings presented in this paper, alongside results of the subsequent randomized controlled cluster trial, can facilitate comparison, replicability and translation of the intervention into practice

Engaging nursing homes (NHs) in the PACE study:comparing recruitment in observational and intervention research designs

Background: NH residents are often excluded from epidemiological studies, demonstrating a need for representative, internationally comparable research in this area. Data on palliative care provided by NHs is reported to the Care Quality Commission in England, but the quality of care is often locally determined. Aims: To review the challenges encountered in engaging and recruiting NHs across England to the European Commission funded PACE research project; a two part study comprising of a retrospective, cross sectional survey of deaths and a cluster randomised controlled trial (RCT) of the ‘PACE Steps to Success’ end of life training intervention. Methods: Study 1 collected quantitative data from NH staff, general practitioners and relatives of 200 deceased NH residents in 50 NHs. Study 2 aimed to recruit twelve NHs, six in each arm of the RCT. The research team encountered challenges throughout the research process, including developing a representative sampling framework, obtaining ethical approvals, advertising the study and recruiting NHs. Results: Study 1 has recruited 44 NHs resulting in data on 92 deceased residents from 32 research visits made so far. Identifying NHs through random sampling resulted in fewer NHs recruited compared to advertising through the ENRICH NHs research networks. Average death rates per NH were lower than expected (3.1 per three months). Study 2 is in the process of recruiting twelve NHs with the support of local ENRICH teams by January 2016. Lack of time and resources, concerns regarding data protection and fear of opening up to potential criticism were identified as barriers to participation. Conclusions: Observational and RCT research designs in NHs require distinct recruitment processes. Whilst representativeness was attained in study 1, ensuring a rigorous random sample was not possible. In both studies, the engagement with NH research networks and informal contacts improved the rate and extent of research involvement

Euthanasia and other end of life decisions and care provided in final three months of life: nationwide retrospective study in Belgium

Objective To explore the relation between the care provided in the final three months of life and the prevalence and types of end of life decisions in Belgium